“A Look into My Experiences at Rare New England” – Celeste If you’ve ever wondered how to get involved with advocacy at the ACD and what I’ve been learning from […]
“Creating Capacity” – Janet When I was faced with the CTD diagnosis of my son, who is now 10, I felt a huge, monstrous, feeling of overwhelming and it never […]
“My AGAT Story” – Christina The Association for Creatine Deficiencies (ACD) recently interviewed Christina, a 17-year-old senior in high school, who was diagnosed with L-Arginine: Glycine Amidinotransferase (AGAT) deficiency as […]
“Share Your Rare” – Regina I had the recent pleasure of attending an event hosted by the Oklahoma Rare Action Network (RAN) Ambassadors, Tamra and Jade. Together with representatives from […]
“Jacob” – Lacy A phrase I hear quite often is, “I don’t know how you do it.” I don’t always know the correct response, so I usually just smile and […]
“IRONMAN Lake Placid Recap” – Jerry My fourth Ironman is in the books. Lake Placid, New York is a beautiful place and the trip was amazing. Beth and I chose this […]
“Atypical Adventures: An Introduction” – Nathan Hello again, friends! I know it has been a while since I have updated everyone on what’s going on in our daily lives. Well, […]
“WE’RE IN THIS TOGETHER, Like It or Not” – Nancy I know I’m one of the lucky ones. We still have our son. There was a moment in time where […]
“Discussions from the Society for Inherited Metabolic Disorders (SIMD) Meeting” – Tony The Society for Inherited Metabolic Disorders (SIMD) holds a 3-day meeting every year to discuss and share ideas […]
“Making Friends” – Nancy When your child is different, there are a lot of worries. We worry about their health; their education; and their safety. But we also worry whether […]